Category: mommyhood

Once again…

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Once again, I’ve not posted in a while. A really long while.

There are a lot of reasons for that. Work. School. Life. And Harper has done really well through all of the busyness of everything, so I’ve been holding on to that and feeling “normal” again.

It’s funny to me the “normal” things that we once took for granted are now big steps. We’ve made it a couple of months with just her regular therapies and no doctor’s visits. She had a good report card without an extensive amount of extra work or tutoring. She’s participated in school parties, festivals, and musicals. I was able to stop using a checklist to help her remember how to get ready in the morning or at bedtime. She even started sleeping in her own bed in our room instead of beside me in my bed! I began to rest easier at night, to not analyze her every move, to loosen the reigns a bit and let her be a kid. It was good.

Things were going so well that I reached out to her doctor in Baltimore to ask about postponing her next appointment in January. She agreed.

And the very next day the seizures came back.

I’m not going to lie- I’m kind of mad about it. Actually, I’m really mad about it. Just like that I’m back to watching her every move. I listen for the rhythm of her breathing to change in her sleep. We’re falling back on checklists to keep her on track and helping her get dressed and reminding her of where things are or what she was just doing. Easy things are becoming more difficult again and her memory seems to be failing her again.

I see her frustration. I see her confusion. I feel her fear and anxiety as she loses control of her body. Last night I held her on the bathroom floor when she should have been snuggled in her bed and I watched her face contort in pain and her muscles twitch involuntarily and I wanted to scream for her. It is not fair!

I hate this disease. I hate what it does to my baby’s body and her brain. I hate the toll that it takes on our family. Yes, hate is a strong word, and it isn’t one that I toss around lightly, but tonight I feel it.

I know that we are the blessed ones. It could be worse, so much worse. We’ve experienced worse, and we see those who live with worse every day. I don’t take that for granted.

But tonight I’m mad. I don’t doubt the goodness of God and I don’t doubt that He is working a plan greater than me and my feelings. I know that my girl brings glory to Him and that ultimately she is His. I have hope that this is not it, that we will see complete healing. But in this moment I feel angry.

And I share that not for pity. I’m not looking for a pat on the back, nor do I need anyone to tell me that I’m wrong. I put this out there to encourage someone else who doesn’t understand the why, who feels angry or frustrated or disappointed, who keeps waiting for that prayer to be answered, who is weary and worn, who feels alone or unnoticed.

You’re not alone. And feeling those feelings does not make you any less. I understand. Our paths may be different, but I get the emotions and the thoughts and the feelings.

Better yet, He knows. The Maker of the heavens and the earth knows your every thought before you even think it. He has formed you and given you purpose, and He loves you with a love like no other. He is good. He is mighty. He is faithful and just. He hears you, He sees you, and He is with you.

In that truth is where I find my rest tonight. I’m praying you do the same, friends ❤️

“He is the Rock, his works are perfect, and all his ways are just. A faithful God who does no wrong, upright and just is He.” (Deuteronomy 32:4)

“O Lord, you have searched me and you known me! You know when I sit down and when I rise up you discern my thoughts from afar... You hem me in behind and before, and lay your hand upon me.” (Psalm 139:1, 5)

He meets us where we are…

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I’m going to be real candid here- This past week tried to take me out.

We had the youngest having seizures, the middle with some mystery illness, the oldest not feeling her best, the mama with a shifting kidney stone, a hurricane that leaked water all underneath our dining room floor, and a trip to Duke… on top of regular life and bills and appointments and school and work.

By the time we made it home from Duke (after having our girl laid out in the grass on the side of the interstate as she seized and vomited everywhere) to our other sick children and my husband left on military orders for the weekend, I was ready to throw in the towel.  If you drove by my house, you just may have seen me waving the white flag out the window.  I. WAS. DONE.

So when Saturday morning rolled around- at 5:30 when my no-sleeping child decided it was time to get up- and the husband was gone and the older kids were arguing and the youngest was having tantrums of epic proportions and my to-do list was a mile long, all that was on my mind was to at least get a fast shower in before we had to leave the house.  And at the point the only way I saw that happening was to turn a movie on so that *hopefully*  no one would cause bodily harm to anyone while I washed.

As I stepped into the bathroom, you can imagine my surprise as I felt an overwhelming urge to open my Bible.  With all that was going on in the house and all that I had to do, the last thing on my mind was to sit down and read Scripture at that moment.  I didn’t have time for that!  We had somewhere to be.  I couldn’t trust the kids alone.  My mind was scattered in a million different directions.  It just was not the time.  But as I tried to argue it away, the Lord kept pressing, kept calling me to come close, kept whispering to my heart to just be still for a moment.

I conceded. I crept into my closet and grabbed one of my “other” Bibles (you know, the ones that haven’t been worn in good yet), and I shut the door behind me and said, “Okay, Lord, here I am.”

And do you know what happened? HE SHOWED UP! He led me straight to the Book of Psalms, to Psalm 65. And as I read those words He spoke life into my weary heart. So many words of that passage spoke so much truth, but the Lord had a message just for me in verse 9… You care for the land and water it; You enrich it abundantly. The streams of God are filled with water to provide the people with grain, for so You have ordained it.

Now, I’ll be honest, this is one of the verses I normally just skim right over. But God stopped me right there, and reminded me that this verse was for me.

He cares for me.

He waters me.

He enriches me.

And He enriches me abundantly. That word abundantly means “plentifully; in large quantities.” In other words, above and beyond what I ask for or even what I could imagine.

That verse goes on to say to speak of the streams (or rivers) of God being full of water- they never run dry! No matter how much it takes to quench me, there is still more. No matter how dry I am, His water keeps flowing.

And it’s flowing for a purpose. It’s flowing to provide just as the Lord has ordained. And He has ordained our provision- we will not go without.

That rest we need? We have it in Him. That answer we are waiting for? It’s coming through Him. That healing we long for? It will be manifested. That comfort, that peace, that wisdom, that discernment, that friend, that love… all of it is in Him.

He is our caretaker, our enricher, our provision, our source of living water… that is a promise to cling to. I’m grabbing on to that with all I’ve got this week- won’t you join me? ❤️

 

September already?!

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Y’all, I just can’t seem to keep to a schedule with these blog posts! My goal for the last year has been to get on a more regular schedule for posting, with at least one post each week.

The last post I shared was in July. It is now September. Suffice it to say my plan is not working.

Anyway, since July things have been pretty calm when it comes to Harper. Now, in my own life with school and work and three children and a husband, not so calm, but maybe one day I’ll get around to a post about all that (or maybe not, given my track record…)

Harper started first grade and has adjusted so well thus far. She is all about becoming more independent and is so excited about learning new things. It has by far been our smoothest transition yet with her, which is an absolute answer to prayer.

As far as seizures go, I was feeling pretty confident in our level of control. We had not seen any daytime seizure activity since her hospital stay, and we spent the last couple of months weaning off of one of her medications. However, those pesky things have been trying to make a reappearance, so we are on heightened alert right now. She is back to having very restless sleep and waking up several times a night, and we have seen some seizure activity pretty consistently in the last week while she’s awake. Fortunately those episodes have not progressed to the full-blown tonic-clonic seizures, so we are still counting our blessings!

We do have a message in to the doctor to see what our next step is to stop these episodes since Harp is down to one med right now, and we have a trip to Duke on the schedule this week. While we have transitioned her seizure care to a neurologist at Johns Hopkins, we still have regular follow-ups and scans with her neurosurgeon at Duke. This week she will have an MRI to monitor the cysts and fluid in her brain, and we are praying that she will be cooperative and expecting nothing but good news!

This morning at church I heard a great message, and one of the points the pastor made really resonated with me. See, Harper is 6 1/2 years old now. We have been doing this for that many years, and we have been steadily praying all along the way. And while we have seen great miracles worked in her, we have not witnessed that total healing completely manifested yet. (And I do emphasize yet because I know it’s coming!).

We get tired. We get discouraged. We have our questions and wondering and not understanding. But this morning the pastor said something along these lines (and I’m sure he said it much more eloquently, but you’ll get the gist)- oftentimes God does not change our circumstances, but He changes US.

We are still in this battle. We still fight every day and our entire family is impacted in ways most people don’t even know. It’s been a long battle. BUT GOD has been faithfully changing each one of us along the way, revealing Himself in ways we never would have seen before, and growing us in ways that we would have never experienced. Our journey isn’t over, and He isn’t finished with us yet. We will choose to be thankful and give Him praise for all He has done, all He is doing, and all that He will still do. He is GOOD, y’all!

First Flights & Faithfulness

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It was a big weekend for Harper (and Mom)… she took her first airplane ride!

She was super excited about it and had a blast, but unfortunately the destination was not so exciting. We had to return to Baltimore for follow-up testing regarding her ESES diagnosis. Since we were just there a month ago and the trip took about ten hours in the car by the time we made all the stops along the way, we opted for the one-hour flight this time. Yes, it was more expensive. Yes, it was a bit scary to maneuver the airports and big city alone with her. But all in all, totally worth it for her comfort!

Harper had an overnight EEG, a re-evaluation of certain items on her neuropsych testing, and a follow-up with the neurologist. The results from everything have been somewhat complicated.

We received the full report from her testing last month, which showed a lot of concerns developmentally. While she has made great strides and progress in so many ways, there has unfortunately been a lot of regression in other areas. I won’t lay out all of those details here, but there is a lot for us to process and consider, and decisions to pray over.

As for the ESES, the good news is that the medicine has decreased the intensity of her seizure activity in her sleep, and there were improvements in one area of her cognitive testing. However, there is a flip side to that. First, while the seizure activity is less intense, it is still at the same frequency, and the testing indicated that her memory is still regressing instead of improving as they had hoped. The next solution would be higher doses of the medicine she’s on- but we just had to decrease it because of the side effects.

We are going to instead try weaning her off of her original medicine to see if perhaps the combination of the two medicines is the cause of the severe side effects we’ve seen. This will be a two-month process, and will be re-evaluated if her daytime seizures start again, but if it goes well, we will then look at tackling the ESES more aggressively with the other medicine.

At times this journey seems so long. There is so much trial and error. There are so many questions without definitive answers. And oftentimes there are so many answers we don’t want to hear. There are times that I get angry about it, and times that I just feel sad as I wade through all of the information that comes at us. Sometimes I wonder how after over six years of this road I can still trust and believe.

Here’s how- the faithfulness of God. I see His faithfulness in every little step we take. Every milestone she makes. Every day she wakes me up with that sweet smile and too-tight hug. Every reminder she gives me and every tooth she loses and talks about infinitely. Every word she learns to read. Every song of praise that leaves her lips. Every prayer she says and every time she raises her hands in worship. Every story she tells with such animation. Every time she falls but bounces right back. Every giggle, every dance, every time I hear her little voice say, “Mommy.” Every time I watch her play with her dolls or be brave or try and try again… it is all because of Him.

And because I’ve seen His faithfulness in all the small things, I know He is faithful in the big things.

He who calls you is faithful; he will surely do it. -1 Thessalonians 5:24

Let us hold fast to the confession of our hope without wavering, for he who promised is faithful. -Hebrews 10:23

For great is his steadfast love toward us, and the faithfulness of the Lord endures forever. Praise the Lord! Psalm 117:2

Real.

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The last week or so has been a struggle.

I usually try to post the good things on here- the answered prayers, the blessings, the good news- and even when the news isn’t the greatest, I try to focus on the good that is there. But today I’ll just be honest, because I think there is danger in putting up a happy front all of the time and not being real.

This week has been a lot of real. It has been bouncing around to appointments with a child who screams for thirty minutes in the car. It has been watching my usually-bouncy-and-happy little girl battle fatigue and aggression, spacing out while I’m talking to her and spending the majority of her day crying, uninterested in the things that she once enjoyed. It has been difficult conversations with doctors. It has been hard-to-swallow information and diagnoses that hurt my heart. It has been pages of reports that bring me to my knees and fear that threatens to cripple me. It has been reverting back to checklists and schedules and techniques to ease my girl’s days as her mind and body grapple with medications that wreck her. It has been saying no to many of the things we usually enjoy this time of year and praying that my other girls will understand. It has been painful, it has been challenging, and it has been lonely.

I found myself weeping one night, which is something I don’t often do. I am just not a crier, but the floodgates opened and as I sat there in a puddle of tears, I was shocked as I realized that I was mentally berating myself for being emotional. I was downright angry at myself for crying. “Get it together! You’re stronger than this! You can’t solve any of this by crying over it!”

And as I chastised myself, I felt the Lord whisper to my heart, “You’re wrong.”

The fact of the matter is, I cannot get this together. This situation is far beyond me, and that is hard for me to accept. I am a fixer. I want to make everything better, especially for my babies. But this time I can’t. Now, don’t get me wrong- I won’t stop trying. I will fight for my girl, even if that means traveling all over the U.S. to get her help or telling a doctor that some of their recommendations just aren’t happening because while they may know her condition, they don’t know her.

But sometimes my fighting isn’t enough, and I have to realize that. Sometimes my fighting needs to be less of my own efforts and more of my prayers to the One who can get this all together. Sometimes I need to do less standing up and running around and more kneeling down and surrendering. (And by sometimes, I mean all the time!)

I also came to the realization that I am not stronger than this. I am weary, I am worn, and I am weak. I’m not strong enough to face this! But the One who is in me is, and His strength is perfected in my weakness. And He does not expect me to face this in my own strength.

As for all that crying? Well, the tears may not solve anything, but the Bible says that God sees them all and that He cares. He draws near to and heals the broken-hearted. Psalm 56:8 in the Message translation says it this way… “You’ve kept track of my every toss and turn through the sleepless nights, each tear entered into your ledger, every ache written into your book.” The tears matter, and my brokenness drives me even closer to Jesus.

So, to those of you who need to hear this reminder, here you go: it’s okay to feel broken. It’s okay to not have all of the answers or be able to fix it all. It’s okay to feel sad, to feel weak, and to feel scared or angry or disappointed. It’s okay! Feel all the feelings. Let it all out.

BUT- don’t stop there. Push through those emotions, cry out to God, and let Him heal your hurt as only He can do. Let it all out to the One who can take it all and bring beauty from ashes. Let Him hold you and mold you and lift your tired bones back up from the mess. We may not get up off the floor with all the answers, but we can step forward with the One who already knows the outcome. I don’t know about you, but I would much rather grab His hand and walk on than hide away and wallow in my tears.

Be real, but be real to the real God. And if you need a friend to lift you to the real God, I’m here ❤️

Sufficient grace…

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I was just sitting here, holding this cup of coffee in my hand, thoughts brewing in my mind… and feeling utterly overwhelmed.  Can you relate?

It has been some kind of month in our house.  After my last post, we made our trip to the Kennedy Krieger Institute in Baltimore for Harper’s testing, which was actually a lot of fun.  We took Grammy and our big girls along and made a mini-vacation out of it, touring Washington, D.C. and taking them all into Baltimore to see the sights for the first time.  After that trip, it was time for Christmas, and then this mama and daddy did something we have never done- we took a trip totally alone together to celebrate our wedding anniversary.  It was completely nerve-wracking to leave the kids, but it really was a much-needed time for the two of us.  Who knew we could actually carry on real conversations??

Anyway, after that trip, we came back to the real world, and it’s been fairly crazy ever since.  Harper got a stomach bug while we were gone, which led to some other issues, so she was sick for a good while.  We ended up with two ER visits in the middle of a crazy snow and ice escapade (which never happens here), so it was an adventure.  She’s all better now, but in the midst of that my middle girl has been dealing with reflux and digestive issues, and has been down the last couple of days with a stomach bug on top of it, so no fun there.  And then I caught the crud this week while dealing with a kidney stone that I’m supposed to have surgery for on Monday.  Apparently we just need our own wing at the hospital these days!

So, as I’ve been forced by my health to slow down this week, I sat down with this cup of coffee and my calendar and my overloaded brain, and I just started talking to the Lord.  Here’s a peek at how that conversation went:

The calendar is full.  Three girls in three very different stages of life.  School and activities and friends and doctors and appointments.  I have a husband with a job and military duties that will be taking him away for several weeks pretty soon, and big decisions of his own to deal with right now.  I have duties to fulfill at church and a ministry to lead.  I have schoolwork to complete (what was I thinking??).  I have a household to keep running, bills to pay, mouths to feed, and let’s not even talk about the laundry pile!  I don’t have time to be sick or deal with these health issues. 

And speaking of big decisions, we’ve got family decisions to make.  It’s time to start thinking about school for our kiddos for next year- I’ll have one going into high school (that alone can bring me to tears), one in 4th grade (who was surely just in PK4 yesterday!), and one starting kindergarten (again, cue the tears), and many schools are starting enrollment now for next year.  It should be simple, but it’s not, as we just received Harper’s results from her neuro-psych testing, ten pages, complete with recommendations about her educational needs.  Ten pages!!  And I have no idea what to do with it. 

Overwhelmed is an understatement.  I feel ill-equipped to handle all of this.  I feel incapable of making the right decisions for myself, much less these three girls who are counting on me!  Surely I am not the right woman for this job (“this job” referring to any of the many jobs on my plate right now!).  Look at me- this is the picture that defines “hot mess express”!

And as I rambled on, I glanced down at that coffee cup in my hand, the cup I grabbed without thought from the cabinet earlier (possibly because it was the only one clean!), the cup my sister gave me some time ago knowing that it was a reminder I needed daily… and I saw the word “grace.”  And my rambling stopped, and I let that word sink in.  Then I turned to the scripture that is also printed on that coffee cup, found in 2 Corinthians 12:

But He said to me, “My grace is sufficient for you, for my power is made perfect in weakness.”  Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.  For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities.  For when I am weak, then I am strong.  (2 Corinthians 12:9-10)

Sufficient grace… the grace that can only be found through Christ.  It covers all of my shortcomings- all of them!  It looks beyond my failures, beyond my confusion, beyond my poor-decision making.  It even sees past my mess- me, my kids, my house, my laundry, the whole lot of it!  It’s the kind of grace that doesn’t need anything from me, other than surrender.  It doesn’t need me to have the right answers or to have it all together or to even look like I have it all together.  Sufficient grace finds me where I am, sees me for who I am, and blankets me in the love of the Great I AM.

I cannot do it all, I cannot take it all, and I cannot be everything that everyone needs me to be- apart from Christ.  I am weak in my own flesh, but the power of the One who lives in me is anything but weak.  His power is perfect.  So, as life comes at me with all its got- “weaknesses, insults, hardships, persecutions, and calamities”- may I be content… content in knowing that God is working, that He has a plan, that His grace is sufficient, and that His power is perfect…. content in knowing that it isn’t about what I can do, but what He is doing.

Little kids, Big questions

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I feel quite certain that God gave me my three darlings to continuously school me on life, on grace, and on myself.  Today was yet another lesson for me… You see, I so often get caught up in this journey we’re on with Harper and lose sight of a lot of other things- like how it isn’t just me on this journey with her, but also my other daughters.  I forget sometimes that they’re constantly observing and learning and living this crazy life just as much as I am.  And today, my middle girl reminded me of that.

It’s been a crazy couple of days.  Harper had physical therapy yesterday, and all was well until she suddenly walked away from her therapist, sat down on a bench, and started seizing.  It was completely unexpected and caught us all off guard, but she regained control on her own and picked right up where she left off.  However, she was all out of sorts all afternoon and evening, and it wasn’t the easiest day at our house.

Today was her occupational therapy evaluation, which again went well but it was deemed that she should commence weekly services there as well.  She worked hard, but was over it by the end of the session, and was a total bear from that point on as we tried to run a few errands before going home.  In the car, the outbursts began- lots of yelling and screaming and kicking, and Maddie’s patience was wearing thin with her little sister.  There’s only so much torture a seven year old can take without snapping, and as we got closer to home, she had had enough.

“Mommy!  She’s always so mean!  Make her stop being mean all the time!”

I hesitated in my response.  Yes, at that moment, Harper was being mean.  And I am a firm believer in disciplining children for meanness.  I am that mom that is always saying (in a voice used especially for those with selective hearing), “Quit being ugly!”  However, it was near nap time, she had been stretched emotionally in therapy, she’d been drug around on errands in the miserable summer heat, and a combination of seizure activity and anti-seizure medications make for nasty mood swings.  So I attempted to explain to the frustrated big sister that Harper had been through a lot that day and that her brain works differently than ours at times, but that just like all of my girls, God made her special.

And with that, I felt pretty good about my answer- for all of about two seconds.  Because then Maddie’s brow furrowed and she blurted out, “Well, why couldn’t God make her special and nice?!”

I had no answer.  Because although it sounded pretty funny, it pained me a bit.  It’s a big question, a question that’s rolled around in my own mind from time to time.  I know God could completely heal my daughter, but for reasons I may never fully understand, He hasn’t.  He saved her life, no doubt, and for that I am eternally grateful, and He’s brought her farther than we could have dreamed three years ago.  But she still has all of these things, these stumbling blocks, these hurdles to jump over.  And while I can see God at work, I can’t fully explain the why’s.

Which always brings me back to the reminder that while I don’t know why, I do know Who.  And I know He’s with us, I know He is good, and I know His plans are ultimately for good.  I know this in my heart, I embrace it in my soul, and I repeat it in my mind on those hard days… But I don’t know how to explain that to a seven year old girl who knows God loves her and her sister, but doesn’t understand why her sister has to hurt and fight so hard and struggle so much (and why she has to be so cranky and hard to deal with so often!).

So, for today, I told her the truth… that I can’t explain how God works, that I don’t know all the answers, and that I, too, sometimes wonder why… But that God doesn’t call us to know everything.  Instead He asks us to trust Him with everything.  And for today, that was answer enough for her.

And tonight, my prayer is that it can be answer enough for me, as well.  Because ultimately this life isn’t about me, or any of my daughters, but about Him, His plans, and bringing glory to His name.

Oh Monday…

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If Monday had a face, it would be mine this evening.  Monday has been very Monday today, y’all!  We had temper tantrums.  We had markers all over the kitchen chairs.  We had spill after spill after spill.  We had moody girls and feisty toddlers.  We had notices about bills we forgot to pay (oops!), a mountain of laundry yet to be washed, and an hour (yes, an actual entire hour) long battle over eating green beans.  The dog had to be chased down the street, medicine time morphed into Mommy wearing applesauce, and potty training resulted in a puddle and a midday bath.  One kid got eaten alive by fire ants, naptime was a whopping 20 minutes long, and Mommy couldn’t wait for Daddy to come home and offer a few minutes of reprieve- except Daddy won’t be home for two more months.

Yes, Monday has been less than pleasurable.  BUT, every day contains a gift.  Some days we have to look a little harder for the gifts, but they’re always there because we serve a great big God full of love and mercy and grace.  He’s always there, so there’s always something to be thankful for.  I can look at this Monday through the lens of negativity, or I can switch perspective and look at all of the good in this day, because there was just as much good as there was bad.

Such as… I woke up in time to start my day with coffee and the Word.  My girls spent a lot of time today playing, using their imaginations, and actually getting along.  We played in the bimg_6268ackyard, and I schooled my kids on how to rock the slip-and-slide.  I didn’t wear nice clothes or makeup or do my hair- and no one cared.  My oldest baked some amazing banana bread, and we enjoyed good Facetime conversation with Daddy.  I had time today to read a great book, and my little bit was all about snuggling before bed and helped me read “Love You Forever.”  And as I type this, my children are all in bed, my puppy is curled up at my feet, and the Olympics are on tv… Not a bad ending to a Monday.

In everything give thanks; for this is the will of God in Christ Jesus for you.
-I Thessalonians 5:18

Every good gift and every perfect gift is from above, coming down from the Father of lights with whom there is no variation or shadow due to change.
-James 1:17

Trust the mommy gut

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Moms, when you have that feeling that something just isn’t quite as it should be when it comes to your children, trust it.  I am learning more and more that I am more in-tune with my kiddos than I think, and it’s always better to err on the side of caution.

We’ve had a rough past couple of weeks with Harper.  I had started to notice small things with her- she struggled with climbing up and down stairs, was uneasy on playground equipment, and started having more falls and kept bumping into things.  Then the behavior issues started.  She’s been super aggressive again, and prone to screaming spells- not the typical three-year old tantrums (although there are plenty of those!), but she also has spells of just pacing in circles and screaming for long periods of time.  She has been a little more apt to shutting down in large crowds or loud places, and then last week the small seizures started again, the first of any kind of seizure activity in about two months.

I have a tendency with Harper to do one of two things- be overly paranoid and question every little difference I see, or ignore things and deny that she has any special needs.  I go from one extreme to the other, and here lately I’ve done more of the ignoring and denying.  She is so smart and funny, such a ball of fire and full of joy and energy, and it is easier for me to chalk up the discrepancies I see as “quirkiness” and just go about our “normal” life as much as possible.

But this time deep down I couldn’t shake the feeling that I needed to ask some questions, and while I was hesitant to reach out, I did finally speak with some people and the decision was made to start with a physical therapy evaluation.  We went today, and a part of me was clinging to the hope that I was being overly cautious.  I really felt that the evaluation would reveal that Harper has no issues other than an over-protective mother.

Unfortunately my gut instinct was right.  It is time to restart weekly therapy services.  We sat down this afternoon and have developed some goals to start with for physical therapy, with the understanding that occupational therapy may be in our future again as well.  And I’m not going to lie- once we got in the car to go back home, I had a moment.  While I am thankful that Harper is able to get what she needs before she falls even farther behind, and I’m grateful that she’s overcome as much as she has in her three years of life, it’s never easy to be told that your baby needs help.  It’s hard to be told that there is a problem, no matter how many times you hear it (and by now you think we’d be used to it!).

No, this isn’t the end of the road, and in the grand scheme of things it’s really a minor setback.  It’s nothing that we haven’t been told to expect as Harper grows, and things could be far, far worse.  Her seizures are still under control at this point, but if they continue we will have to consult with the neurologist again to be sure we aren’t missing something.  She hasn’t lost any skills yet, which is remarkable for the intensity of the seizures she’s had. She just isn’t moving forward on her own as smoothly as we had hoped.

We are learning that Harper’s condition is going to keep us in a constant state of learning.  We never can get too comfortable, and we certainly cannot predict what will happen in the next few hours for her, much less years down the road.  But she’s a fighter, feisty and determined, and I know this is just one more hurdle for her to make her way over one way or another.  God has big plans for this kid, and we’re just along for the ride, trusting Him every mile of the journey.

Masquerades & lonely days

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Have you ever felt alone?  I don’t mean you’re home by yourself and you’re alone, but the kind of alone where you can be surrounded by people (like adults or little people, depending on your situation) but still feel isolated.  You just don’t quite fit in any of the boxes and you find yourself wandering on the outskirts, just at the edge of the dark.  You weave in and out of the crowd, make small talk along the way, but realize that you’ve put on a mask for the world to see and perhaps no one sees what you look like underneath it all.

I’m learning that on this journey of mommyhood it’s far too easy to fall into this trap of loneliness.  We worry that we’re messing up, that we aren’t disciplining our children correctly, that they eat too much junk food, that they watch too much tv, that we don’t do enough crafts, that the house isn’t clean enough, on and on and on.  We compare ourselves to what we think we see in other moms, forgetting that we often perceive things to be very different from what they actually are.  We don’t want people to know what really goes on in our homes, so we put up a good front- so good, in fact, that we fool even ourselves.  But, in the midst of our masquerade, there is always One who cannot be fooled.  There is One who sees all and knows all- even those thoughts and feelings we keep to ourselves.

In a rare moment alone, I found myself listening to a sermon on love, and totally convicted of all the ways I fall short in demonstrating such love to my family on a daily basis.  (You know, love is patient, love is kind, it does not envy… it is not easily angered- not exactly the picture of love I’ve been painting these days!)  As I was praying, the Lord revealed to me the masquerade of mommyhood- within the walls of my home, I’m less than patient and kind, I catch myself being jealous of what I see others doing, and heaven knows I can get angry when the bickering amongst siblings begins!  Yet that’s not what I want people to see.  So we dress nice and smile and say everything is good when someone asks, and I bow my head in humiliation when my children throw a fit in public, or when someone shows up unannounced and sees the mess in my home.

And where does that get me?  Into the land of the lonely.  Feeling like I don’t measure up, that no one gets it, that I’m all by myself on this journey.  Now, granted, a lot of times I am by myself- with a husband who travels a lot and one daughter with anxiety and OCD and another daughter with special needs, I can be a bit isolated. But the loneliness is amplified when I try to pretend that everything is nice and happy and “normal” all the time.

However, the Lord led me to His Word- specifically to Psalm 139:1-10…

You have searched me, Lord, and you know me.  You know when I sit and when I rise; You perceive my thoughts from afar.  You discern my going out and my lying down; You are familiar with all my ways.  Before a word is on my tongue You, Lord, know it completely.  You hem me in behind and before, and You lay your hand upon me.  Such knowledge is too wonderful for me, too lofty for me to attain.  Where can I go from your Spirit?  Where can I flee from your Presence?  If I go up to the heavens, You are there; if I make my bed in the depths, You are there.  If I rise on the wings of the dawn, if I settle on the far side of the sea, even there your hand will guide me, your right hand will hold me fast.

You see, even when I feel at my lowest, when I feel I am completely alone and no one understands, I’m wrong.  There is always One who is with me, always One who understands.  He knows me intricately.  He knows my moves, He knows my thoughts, He knows my words.  He knows every detail about my being, knows every detail of what I’m facing, and He understands me better than I do- because He knows not only where I am and what I’m doing, but what is to come in my story.  Wherever I go, He is there.  He’s with me on the mountaintop, He’s with me in the sludge of the valley, and He’s with me on the journey in between.

So, goodbye loneliness, goodbye masquerades… What joy there is in knowing that wherever this journey leads me, I have One with me who refuses to leave my side, who refuses to leave me alone, who refuses to give up on me.  He knows me- the real me- and loves me like no other.